New results. Still feel 'Meh'

Hi all,

I guess I'm just hoping to chew the fat with other people who know what I'm talking about!

I see a private endo from the thyroid list, who is great, but quite difficult to get hold of.

I was on 50mcg levo and 90mg Erfa. Results after 9.5 weeks were:

TSH: 0.51 (0.27 - 4.2)

FT4: 17.6 (12 - 22)

FT3: 5.9 (3.1 - 6.8)

I increased to 75mcg levo because I was feeling so crappy and couldn't get hold of my endo. Then upped to 120mg efra as well.

Results after 8 weeks on 75mcg levo and 120mg Erfa.

TSH: 0.05 (0.27 - 4.2)

FT4: 17.7 (12 - 22)

FT3: 7.5 (3.1 - 6.8)

So I've overshot the mark for T3 but T4 has barely moved. 🤔

My endo has suggested switching to T3 previously but I wanted to give Erfa a proper go.

I just don't understand why I still feel so flat and why I run out of steam by late afternoon.

I'd love to hear some thoughts.

[SlowDragon Administrator]

What’s the reason for your hypothyroidism

Do you have autoimmune thyroid disease?

How are you taking your NDT

Do you split the dose

[Hidden in reply to SlowDragon]

I have hashis.

I take both NDT and levo all at once at bedtime.

[Imaaan]

8 weeks on 75mcg levo and 120mg Erfa.

^^ Out of curiosity, how are you dosing it ?

[Hidden in reply to Imaaan]

I take both all at once at bedtime.

[Imaaan in reply to Hidden]

Thanks for letting me know.

[Gingernut44]

Perhaps you could try 100 Levo and drop Erfa back to 90 for 6/8 weeks and retest. It’s all trial and error when trying to find the right dose to feel well. Splitting the dose never worked for me but have you tried it?

[Hidden in reply to Gingernut44]

I haven't. Only because I'm forgetful and I really like drinking tea and I worry I'll either forget to take the tablets or forget I've taken them and have a brew! 😂

I'm not against splitting the dose; I'd just like it to be my 'last chance saloon'!

[Lotika]

I think that (as well as lowering NDT - it looks like too much?) it might be worth trying to split your dose. If you are feeling rubbish in the afternoons, mainly, maybe an NDT top-up in the morning might help? I know it sounds a bit like rearranging deckchairs on the Titanic, but it helped me to move my second T3 dose a while back!

[pennyannie]

Hello Witchinghour :

Personally I'd be looking to drop the T4 and switching to Efra only :

I think you are mixing up 2 different treatment options and it's causing more confusion than necessary.

Adding extra T4 simply erodes that unique balance of T3 and T4 found in NDT that we do know has worked well for many thousands of people for over 100 years.

True some people find they need to add a little T3 or T4 when they have built up the NDT dose to try and find their elusive ' sweet spot ' :

I found that my symptoms continued to improve for several months after I found my dose of NDT - it takes time - which I appreciate hangs heavy when not well.

I also think you need to be taking the main dose of NDT as your body wakes up and not when you are going to bed.

[Hidden in reply to pennyannie]

This is what my endo was aiming for so I've scuppered those plans 🤣 I just know I feel better with higher levels of T4 and I'm not getting that on NDT alone. Looks like I'm not getting it with extra T4 either so something has to change.

I am torn on switching to T4/T3 combination therapy simply because I could buy T3 while I'm on holiday and have a bit more autonomy in my dosing. But I don't want to start again on another therapy. I'm almost at my 2 year anniversary of getting my first levo script and I just want to be settled for a bit.

I wonder if I'm aiming for a unobtainable level of 'health'. I just want to be able to run again and I definitely don't feel able to do that yet... despite bloods looking great!

Morning NDT I will have to try. Begrudgingly though... I will miss that cup of tea in bed!

[pennyannie in reply to Hidden]

I take mine at around 3.0am when my body wakes me up for a toilet break ?

[Hidden in reply to pennyannie]

For better or worse; I am a very heavy sleeper. Very little gets me out of bed in the middle of the night!

I very rarely eat breakfast so morning is entirely feasible... except for that pesky cuppa!

[Kowbie in reply to Hidden]

Hope you don’t mind me coming in ,but if you need to go to the toilet during the night you could take it then ,then when you wake in the morning you can drink as much tea as you want (haha) hope that’s of some help , that’s what I do ,hope you soon feel better

[Hidden in reply to pennyannie]

Do you think reducing my levo dose down to 0 over the coming weeks/months and sticking to 120mg NDT would be something to aim for?

[pennyannie in reply to Hidden]

If you stop the T4 overnight it will take around 6-8 weeks to fully leave your body so I'd expect you'll likely need to increase your NDT as the T4 reduces .

Maybe leave a week with no T4 and then add 1/4 grain and see how you go, maybe adding an additional 1/4grain in around 2 weeks, maybe not, just see how you feel.

[pennyannie in reply to pennyannie]

I've just noticed that you have Hashimoto's AI disease.

So this does throw another spanner in the works for you as you are likely to experience erratic own thyroid production as this AI disease systematically attacks and disables your thyroid gland.

it may take many years, even a lifetime, or it may have already damaged your thyroid enough as to render the gland totally disabled - I don't know - but as the thyroid becomes further damaged it becomes less productive and you in turn may well need to be adjusting your thyroid hormone replacement.

I read that some Hashimoto's patients sensing ' a swing ' in symptoms coming on stop their replacement dose for a day or two, so to try and offset the severity of the attack. However swings inevitably swing back, and find their replacement dose needs to be adjusted to compensate for the further damage caused to the thyroid gland.

You can read further around Hashimoto's AI disease on the Thyroid UK website who are the charity who support this forum :

thyroiduk.org

thyroidpharmacist.com