Confused and concerned by latest thyroid results

[Lucy___]

Hi everyone

I'll keep it shortish as I'm not feeling well.

Endocrinologist started me on levothyroxine 25mcgs in September last year due to very extreme exhaustion and many symptoms of hypothyroidism.

At the time my TSH was 1.8 (it traditionally varies between 1.8 - 3.5)

My T4 was 16 but varies between 12 - 16

My T3 was 3.7 but varies between 3.1 - 3.7

He started me only on 25mcgs as I have a heart condition so we wanted to take it carefully.

I had my thyroid bloods rechecked today and my TSH has massively improved to optimal at 1.1

But my T4 has decreased to 14.

And I feel shocking and have been declining again with very severe exhaustion and extreme daytime sleepiness. I'm now using a mobility scooter and wheelchair as I don't really have the energy to get around and most days I am falling asleep all day every day.

I have barely any energy to do anything at all.

I am getting quite frightened at the levels of sleepiness I am experiencing during the day. I sleep all night, wake around 12, struggle to get up then I am falling asleep again by about 3pm and back in bed.

Can anyone tell me what could be causing my TSH to improve but my T4 to decline?

The lab refused to do the T3 of course as it's NHS even though my endo asked for it.

All my other bloods looked good, vitamin D had had a huge leap from 46 to 132 which is incredible (I use the spray). There was a slight improvement in my ferritin and improvements in other bloods like my Urea.

I am confused about what this means with the levo and am thinking of coming off it if it's making my symptoms worse so if anyone could explain why my TSH is now optimal but my T4 lower I would appreciate it.

I cannot get in to see the NHS endo and my GPs refuse to have anything to do with my thyroid at all so I'm at a bit of a loss as to whether I should stay on the levo or not.

Not taking it tonight anyway.

Thanks 😊

And sorry if I don't manage to reply to anyone, I do try if anyone is kind enough to comment, I just don't always manage it because I'm so exhausted.

[Lucy___]

See ? This is grim.

How can I be on levo and my TSH be now optimal but my T4 decrease after being stable at 16 😬

No sense. Makes no sense at all. Nada

Test results

[Lucy___]

Gah, I'm coming off the levo. I'm sick of trying to figure this out without the help of the doctors.

I can't actually believe my T4 has gotten worse after going on it.

[Lucy___]

Ok I've just had a look online and realised that my TSH will have been at it's lowest when my blood was taken at 5pm so the reality is that my TSH was probably higher at 9am and therefore it looks like the 25mcgs of levo isn't doing a whole lot of anything really as my levels are probably similar to where they were in September.

I'm going to ask if they will increase the levo. Well ask the GP to ask the consultant as I can't and they won't touch my thyroid themselves.

[TiggerMe Ambassador]

TSH really isn't the thing to be monitoring, 25mcg T4 will be enough to supress any natural production but isn't enough to replace what you need and this shows in your fT4 result and inability to function, you'll need to work your way up to a full replacement dose which is likely going to be 75mcg+

The Consultant that started you on T4 should be monitoring you every 8 weeks and increasing your dose

[greygoose]

Three things:

1. There's no such thing as an 'optimal' TSH. Your TSH is euthyroid but that's not a lot of good when you're hypo. The TSH is pretty much irrelevant when on thyroid hormone replacement, it doesn't give you much useful information and is unreliable.

2. Its lowest point would be around midday, not 5 pm. By 5 pm it would be on its way up again. Best time to have the blood draw is a little before 9 am.

3. Your FT4 has dropped because your dose is too low. It's high enough to reduce the TSH, so the thyroid stops producing T4, but your dose is not high enough to replace what your thyroid was making. So, you have in effect had a decrease in T4.

It makes perfect sense. That's how it works.

[FallingInReverse]

Hi Lucy, hang in there, youve had such a hard time.

Of course TM and GG are right in their replies.

25 is such a low dose. I was left on 50 mcgs a day in my first year and was convinced I was slowly dying… I can’t count how many posts I’ve read on here from people who suffered under the same for so long. For me, the 50 helped a couple symptoms but I was falling asleep in the afternoons and at least once a week I would lose the entire day… would wake up for a couple hours but would just crash on the couch and sleep the day away.

I don’t understand why doctors all over the world can’t read a simple patient insert for Levothyroxine that clearly states a target dose is 1.6 mcgs per kilo of body weight, and that even if starting at lower doses (like for those with a fib) that doses should still be adjusted up every 6-8 weeks.

I recall you had some overlapping issues, so I know it’s complicated. But at least if you get your ft4 and ft3 up, there’s a decent chance that you will at least feel “better” than you do now.

Sending hope and strength your way. Keep us posted.

[SlowDragon Administrator]

request 25mcg dose increase in Levo

Initially perhaps increase by 12.5mcg daily (cut 25mcg in half) so on 37.5mcg daily

After 4-6 weeks increase to 50mcg daily

Retest 2-3 months later

ALWAYS test 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)

Which brand of levothyroxine are you currently taking

Levo doesn’t top up failing thyroid, it replaces it

Dose started low, but increases slowly upwards until on full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

So you will need several further increases in dose over coming year or so

[Lucy___]

Thanks guys, I'm just waking up now but I feel grim as always so doubt it'll be long before I'm back asleep again.

I'm just reading through the comments but thank you, it all makes sense.

My T3 has dropped aswell so it's no wonder I'm feeling bloody awful.

Seems clear that the levothyroxine has stopped my own production but isn't enough to increase my levels.

There's no point in contacting my GPs as they won't touch it but I will try and contact the endocrinology department today and ask to speak to an endo nurse and ask them to ask the doctor if I can increase the levothyroxine.

If not then I'll have to come off it as it's obviously doing me no good at all on the dose I'm on.

Test results