Query viz meds reduction

[SilverSavvy]

I've just started on a T3 trial two month ago and a doctor in the practice who doesn't know me has noticed from latest results that my TSH is suppressed and required me to cut down my T4 to 75% of my regular dose every other day. ie (75mg/100mg on alternate dates). My regular doctor warned that this might be necessary if the T3 worked.

Results are: Free T3 5.7 (3.1-6.8)

Free T4 20.5 (11-22.00)

TSH: 0.07 (0.3-4.2)

Would following his advice cause me problems? TheT3 and T4 look pretty good to me.

I was feeling rather good on 100mcg an the new T3 I thought. Mostly take about 5 - 7.5mcg daily.

Thanks anyone who can advise.

[greygoose]

Yes, but he doesn't like the low TSH. So, their immediate knee-jerk reaction is to reduce the levo. And they have never quite understood that that just doesn't work! The TSH is not going to rise when you're taking T3. 🤣🤣🤣

[Baobabs in reply to greygoose]

I am in a similar position and since reducing my Levo 25mgs, I feel under par, tired, headaches and a bit depressed. I used to work as a teacher internationally and now I am onto my 11th Endocrinologist, all who have no idea about how T3 meds work. My frustration is off the charts. I only feel on top of the world when I don’t visit my GP or Endo!

[SilverSavvy in reply to Baobabs]

Oh Baobabs, I am so sorry to hear this...the disease stealing your life/sense of self away incrementally is just the worst isn't it...and then being someone who needs the Holy Grail T3 on top is just one more ghastly hoop to jump. The highest and the most necessary just when you're feeling like you can't go on. Sending my best to you that you get resolution soon and it stays that way forever.

[Jaydee1507 Administrator]

How did you take this blood test? Did you test at or earlier than 9am and leave 24hrs for levo & 8-12hrs for T3 last doses before the test?

Free T4 (fT4) 20.5 pmol/L (11 - 22) 86.4%

Free T3 (fT3) 5.7 pmol/L (3.1 - 6.8) 70.3%

I strongly suspect that this doctor is just looking at the TSH, probably hasn't asked you how you feel and is just worried about a piece of paper in front of them.

Your FT4 could be a touch on the high side. 70% might be a better number to aim for but it really depends how you feel.

If you want to stay where you are you could quote NICE guidelines at them.

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. "

[SilverSavvy in reply to Jaydee1507]

Thanks Jaydee...yes, tests done before 9am, protocol followed exactly as recommended on this forum for both T3 and T4. Interested to know that 70% on T4 would be good rather than 84%. It might be a bit less now anyway as I was feeling a tad whizzy that week (following gradual upward titration of T3) so I dropped the T3 down a bit and immediately felt less weird. Think I will do as SD suggests and also reduce the T4 one day a week or so.

Folks on here seemed horrified that I was told to take 10mcg plus 5mcg of T3 daily straight away so I spent some weeks working up. By the time I reached taking 10mcg per day for a week alongside 100mcg of levo it felt like too much. So I never took above 10. That was not long before the test.

7.5mcg feels about right - everything working nicely and vitality/stamina significantly improved against inconsistent gains on levo alone. I can honestly say that I do think the T3 is doing me good and although my T4 was at about 80% through range before, T3 was at 24% which showed low conversion. Hence the T3 trial. Looks like it's working...now all I have to do is get the dosage precise. I hope!

[SlowDragon Administrator]

was feeling rather good on 100mcg an the new T3 I thought.

Mostly take about 5 - 7.5mcg daily.

You need to take exactly same dose T3 everyday

GP shouldn’t meddle with dose

On Ft3 it’s completely normal for TSH to be low

Most important results are always Ft4 and Ft3

You are could try TINY dose reduction in levothyroxine

Eg 75mcg one day a week and 100mcg 6 days

Or 87.5mcg twice week and 100mcg 5 days

What are your vitamin levels?

[SilverSavvy in reply to SlowDragon]

Thanks SD...good to know. Vits are not quite optimal but I'm working on them and B12 at two thirds of range. It's taking a while longer for the folate but that's at over halfway through range now and rising. The Vit D took a bad dip earlier in the year when my levo was increased to 100mcg - but latest reading was pretty good (around 75%)

[TiggerMe in reply to SilverSavvy]

I'm with SD don't be bullied into lowering your T4 to much if you feel well, when I introduced T3 my Ft4 levels gradually continued to dropped for 6 months, it can take a while for the true effects of T3 to show after the initial boost.

When I then saw the Endo and they wanted to lower my T4 dose I soon felt awful and it takes a good few months to climb back up... it had no effect on raising my TSH!

[SlowDragon Administrator in reply to TiggerMe]

it had no effect on raising my TSH!

Agreed….

When I lowered Levo dose and Ft4 dropped to 13 (12-22 range) I couldn’t function and TSH went from 0.01 to 0.02

I choose to keep my Ft4 and Ft3 in top third of range….this is where I feel well and can physically function

[SilverSavvy in reply to SlowDragon]

Having no effect on raising your TSH by dropping T4 when taking T3 is very interesting, isn't it? I'm definitely on the mend with this T3 but chopping and changing on the T4 (100/75) has a noticeable effect. I felt more balanced on a steady amount. I think I'm quite sensitive to changes...or maybe the T3 is having more of a compound effect now, two months in than in did two weeks ago before doc decreed the reduction. Haven't really got enough personal experience to make an educated decision but I'd rather listen to you guys than the duty doc who probably didn't even know I was on T3.

[SilverSavvy in reply to TiggerMe]

Interesting..thanks Eeyore!

[Vasiliki99]

Cut down a bit if u want not much then see how u feel 3 months time ....

[SilverSavvy in reply to Vasiliki99]

Thanks ...Slow and steady does seem to be my way of achieving better outcomes

[HappyHealthyGirl]

Hi SilverSavvy ,

I concur with everything that everyone has said!

Personally, it seems too soon to be changing anything. I would say to this doc' that as you've only just worked up to your current dose, that you really need to stay on this same dose for several months to let everything settle down, before being retested and reviewed.

Also, to reiterate that, as SlowDragon says, you must take exactly the same amount of T3 every day at the same time, and away from food.

You may find it helpful to split your T3 into 2 or 3 doses throughout the day (I split mine into 3 doses 3.5 hours apart), but for now just stick with what you're doing and make sure that it suits you.

Also, make sure that you get the same brand of T3 each time!

Excellent advice to introduce slowly! Always make any changes very, VERY slowly, especially with T3.

And well done for finding a doc' to trial you on T3!!!!

Hope this helps,

@HappyHealthyGirl

[SilverSavvy in reply to HappyHealthyGirl]

Thank you HHG (hope you are enjoying life as your monicker suggests!). I take the T3 alongside my T4 first thing on empty stomach and 1 hr before food. I did try splitting it out through the day as best I could with tiny bits of chopped up 20mcg pills but it made no discernible difference. However, I am DEFINITELY benefitting from the T3 addition and now much more capable of seeing the day through and doing more work. Still trying to figure out whether the dose becomes compound over time (which seems unlikely as it's out of the system within 12 hours I gather) but I'd say the trial is proving a success and yes, I definitely do my very best to make sure it's the same brand on my prescription. Which is not yet on repeat like the Levo. Luckily, when I can get to see/speak to my very busy doc, she concurs so once I'm past the receptionists (who think I'm simply a nag), it's all good so far. Fingers crossed it stays that way.

I can't thank you all on this forum enough. Your shared wisdom has, quite literally, changed my life. I can feel myself coming back into who I used to be after two and a half awful years of upward titration (and twenty years of sliding downhill). It makes me very emotional to see the re-emergence. Wouldn't be in this place without you. Big virtual hug from me all round.