Help with results - what would you do?

[66olives]

Hello

I finally got a private endo to agree to up my meds from 75mcg levothyroxine to 100 or112.5 if I felt it necessary in July 2023 allowing my TSH to fall below range, and that I understood and was willing to take the risks. My 3 pm slump was dangerous as I was fighting to stay awake on the way home from work. By September life was beginning to improve.

Move forward to October when the NHS endo appointment was brought forward from April 2024. Dr decided to reduce Levo and introduce Liothyronine. I'll give it a go. Dr had not seen a single T3 result at this point. The blood tests were done a week later, I followed the recommendations from this site. I started the new meds (levo 50mcg and 10mcg Liothyronine) and after a a week or so I felt better, but then the exhaustion returned. She asked for results after 8 weeks.

As soon as this test was done I upped the levo to 75mcg daily. But Endo wants Levo to remain at 50mcg as the TSH result is better. I have not told her yet that I increased my levothyroxine again, it was too near Christmas and I needed to be able to stay awake and cook without brain fog causing food poisoning.

To me, these results reflect why I was feeling better until the lower dose of levothyroxine reduced my T4 levels. Brain fog (losing words and trains of thoughts are lethal for a writer) and exhaustion are my biggest issues. I am even learning to tolerate the tinnitus.

How do I persuade the endocrinologist and or GP that the risks of a suppressed TSH are well worth it for quality of life I get?

For the record, I weigh 82.5 kg - GP had me on 75mcg of thyroxine and wanted to reduce it due to TSH being too low. My TSH loves to see-saw but stays lowish.

The Vit D results were within 3 weeks of returning from Egypt (9hrs bright sun a day and plenty of swimming - was not impressed with the result. I take Vit D3 + K, Vit B12 and B complex. I do stop the all Bs a week before the blood tests.

With thanks

66 Olives

[greygoose]

There are no risks with a suppressed TSH. It's suppressed because you no-longer need it. It's suppressed because you're taking T3, not because your dose of levo is too high.

It's far more dangerous for your heart and bones to be under-medicated - as you appear to be - just to keep your TSH in-range, than it is to have your FT3 slightly over-range.

[66olives in reply to greygoose]

I had to request the results with ranges. The Endo commented in the accompanying letter about improvement of the TSH level.

I will inform my GP of the increase in my levo when I get to see her. I need an apt as I fainted on Friday evening. I am not someone who faints.

Thanks for the reassurance, it is appreciated.

[greygoose in reply to 66olives]

Silly man! The TSH isn't 'improved'. It's irrelevant. And it certainly has nothing to do with your symptoms.

[SlowDragon Administrator]

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Is this how you did last test?

FT4: 8.6 pmol/l (Range 7.7 - 15.1)

Ft4 only 12.16% through range

yes strongly suggests you needed dose increase in Levo

Retest again 6-8 weeks after being on 75mcg daily

Which brand of levothyroxine are you using

Do you always get same brand

I take Vit D3 + K, Vit B12 and B complex. I do stop the all Bs a week before the blood tests.

You only need to stop B complex the week before test

you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Your high thyroid antibodies confirms autoimmune thyroid disease

Are you on strictly gluten free diet and/or dairy free diet

[66olives in reply to SlowDragon]

Hi SlowdragonThanks for getting back to me.

I did not split my T3 the day before my test, I was told to take it in one go by the doctor, so thar is what i have been doing. The last dose for both was 8am previous morning.

Is there an advantage to splitting T3 on a daily basis, not just pre- bloodtest? I assume T3 has a short half life, if this is the case.

I always use Better You sprays as I find them more effective.

I will try to get the separate folate next time im out as suggested.

My Levo is Accord the T3 is Morningside

I am gluten free, and it is getting easier to stick to. I'm not dairy free.

I have a home blood test waiting for the first Monday in Feb.

[SlowDragon Administrator in reply to 66olives]

on 100/112.5mcg before adding T3

FT4: 12.3 pmol/l (Range 7.7 - 15.1)

Ft4 only 62.16% through range

FT3: 5.6 pmol/l (Range 4.3 - 6.8)

Ft3 not bad at 52.00% though range

So you probably didn’t need to reduce dose Levo at all

conversion rate wasn’t bad

And maybe could have just had next increase in levothyroxine to 125mcg

But if you feel adding T3 is helping stick with it, but increase Levo SLOWLY upwards

I did not split my T3 the day before my test, I was told to take it in one go by the doctor, so thar is what i have been doing. The last dose for both was 8am previous morning.

So Ft3 result falsely low as last dose was 24 hours before test

Day before a test split dose, even if you don’t normally

Whether you need to split dose everyday, is trial and error.

You might not need as much T3 …..perhaps 2 x 2.5mcg

[66olives in reply to SlowDragon]

Thanks. I probably don't need it, but to feel healthy my TSH is suppressed and the GP and Endo do not seem to like that.

[SlowDragon Administrator in reply to 66olives]

my TSH is suppressed and the GP and Endo do not seem to like that.

They are not waiting long enough for increase in Levo to settle

TSH always drops after an increase in dose then slowly rises as dose settles

And taking any T3 will suppress TSH more than taking levothyroxine when adequately treated

Many many members have suppressed TSH on levothyroxine or T3

[TiggerMe Ambassador]

With your results on levo... 100/125mcg

Free T4 (fT4) 12.3 pmol/L (7.7 - 15.1) 62.2%

Free T3 (fT3) 5.6 pmol/L (4.3 - 6.8) 52.0%

T4:T3 Ratio 2.196 

This show you convert well and that an increase to 125mcg daily would have been a good next step... you really aren't going to benefit from the added T3 and lack of T4

If I were you I'd go back to 125mcg levo as you said by September you were starting to feel better and just needed a little more 🤗

As a rough guide with your weight 82.5 kg you'd expect to need around 130mcg T4 per day

[66olives]

I agree but the doctors hate the TSH suppressed. I had to pay a private endo to get it back up to 100mcg. Now I have a state one who likes to offer T3 ...

[SlowDragon Administrator in reply to 66olives]

Now I have a state one who likes to offer T3 ...

But has reduced your levothyroxine so much you are now more hypothyroid than you were on 100mcg levothyroxine