reposting - sweet spot missed advice needed on dosing

[Slowrunner1208]

I messed up my last post so trying again (sorry to greygoose and Beads who replied to my first attempt!

After my previous results, at my annual thyroid check with GP, of extremely low TSH and v high T4 I was told to reduce my levothyroxine. I’ve retested with Monitor My Health and looking at my new results I think I’ve missed my sweet spot.

- TSH 0.44 ( 0.27 - 4.2) - 4.3% through range. - T4 13.6 (12 - 22) 16% through range. - T3 4.4 (3.1 - 6.8) 35% through range

I followed the protocols for testing

Current meds

10mcg liothyronine (privately sourced)

Alternate days of 75mcg / 100 mcg levothyroxine

I also take the common supplements (vit D, B complex etc)

Current symptoms - the T3 has made a big difference & I feel better on it. The biggest current symptoms are ongoing and increasing anxiety and the thyroid tiredness keeps creeping in.

My GP is aware that I take T3, not exactly supportive

Has anyone got any advice on what adjustments I should make?

[GlowCoach Administrator]

If you dropped from 125mcgs Levo to 75/100 alternating that was quite a big drop. You could go back up to 100mcg a day and see what that looks like in 6-8 weeks.

[Slowrunner1208 in reply to GlowCoach]

Thanks GlowCoach the drop was on the advice of GP. I’m trying to strike the right balance of self advocating and complying. Largely because of the way I’ve been made to feel in the past (a hysterical old woman) and the animosity towards T3 in my local area. I may be feeling better but I don’t think I’ve the energy to butt up against my GP

[GlowCoach Administrator in reply to Slowrunner1208]

25mcgs is the maximum amount to change by at any one time. GPs can be very heavy handed.

Likely your GP will be happy with your latest results as the TSH is within range. The problem is that almost any amount of T3 lowers TSH often to the point of suppression.

You can quote NICE guidelines which might help.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

[greygoose]

OK! I was just about to reply to your last comment when you deleted the post! Why?

Anyway, I was going to say: As you have Hashi's, it's not that simple. It could be that your high FT4 - and highish FT3 - has nothing to do with your dose, but more to do with a Hashi's 'hyper' swing. When was your last blood test before this one? Your FT4 is excessively high considering your dose.

[Germany1924 in reply to greygoose]

Sorry I never deleted anything so have I got hypothyroidism or hyper x

[tattybogle in reply to greygoose]

Gremlin alert ?... these replies seem to be on the wrong post .

[greygoose in reply to tattybogle]

Well, I'm on the right post, I think it's Germany1924 that is on the wrong thread. I was replying to Slowrunner1208 😂

[tattybogle in reply to greygoose]

Ah .. i'll shut up then ....lol

[greygoose in reply to tattybogle]

Could have been gremlins lead Germany1924 to this thread, though.

[Slowrunner1208 in reply to greygoose]

Hi greygoose I deleted the post because I’d completely messed up the %. I was trying to save time with a cut and paste and ended up with a mash up of previous and latest results. Sorry!

The new post shows the right results. My T3 and T4 have both dropped a lot, more than needed I think.

I’ll let my GP know about the results, they’ll be satisfied with the TSH.

I keep thinking I’ve got my head around hashi’s and then realise I’m nowhere near competent.

[greygoose in reply to Slowrunner1208]

Well, now that you've corrected the blood test results, my comments about Hashi's are redundant.

That said, we still don't know if the reduction in your levels was due to a reduction in dose or to Hashi's. As has been said, the reduction was unnecessarly large, but does seem to have had an excessive effect.

But, you cannot continue like that, trying to keep your doctor happy is going to have a negative effect on your health. You are taking T3 and taking enough T3 is going to mean your TSH is going to be low. That is a fact of life and one your GP just has to accept. Your FT3 is now too low for good health. (Which does suggest that your conversion wasn't as bad as all that.) So, what are you going to do? Increase your dose of T3? The TSH will go down again. It's a struggle without end unless you confront your doctor and more or less say: that's the way it is, deal with it!

[Slowrunner1208 in reply to greygoose]

That’s really helpful, thanks greygoose

I’m going to give more thought and research into next dosage step. I need to get more T3 next month so will speak to the prescriber too.

First though I’m going to share these results with my GP and outline that now I’m on T3 the TSH measure is inevitably suppressed. I’ll do it in writing so it’s on record and I can get someone else to check I’m making sense before I press send.

Really appreciate the time you’ve given me! 😊

[tattybogle in reply to Slowrunner1208]

best not to say it's 'inevitably' supressed... not everyone taking T3 has a supressed TSH eg McPammy on here doesn't... she is unusual.... but best not to give them any ammo to shoot you down with.

better to say something like 'T3 supresses TSH more than T4 ' or 'TSH will be relatively more supressed when taking some T3'

see first reply to this post if you want some science to baffle them with ( the reply continues much further down the post too) can't remember exactly what i put in there now but you may find something useful: healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[Slowrunner1208 in reply to tattybogle]

Thanks tattybogle great advice 😊

[greygoose in reply to Slowrunner1208]

You're welcome.