25mcg Levo and feel worse

[Ad78]

I recently posted about being put on Levothyroxine by my GP who referred me to Endocrinologist (still waiting for an appointment). GP put me on 25mcg on a trial basis because NHS test don't show issues with thyroid.

My first week on Levo, I felt an improvement in fatigue. I could sing again too!

A month in and I feel worse than I did before it. I fall asleep at the drop of a hat particularly after a meal (didn't used to happen) and I snore so loudly that I wake myself up sometimes. I don't feel refreshed after these naps. My eyesight is worse : more cloudy and shortsighted. My body aches so much particularly my feet,

I have ordered blood test via Medichecks and will get blood draw when kit arrives.

I am unsure if to stay on Levothyroxine

[SlowDragon Administrator]

how old are you

Standard STARTER dose of levothyroxine is 50mcg unless over 65 ….then starter dose is 25mcg

You are almost certainly ready for next dose increase to 50mcg

Retest 8 weeks after each dose increase in Levo

Likely to need further increases over coming months

[Ad78 in reply to SlowDragon]

I am 46.

I am afraid to increase it because of how I am feeling. Could symptoms be caused by too low dose?

[A2C3 in reply to Ad78]

Yes I had this when I started on 25 and only started to feel better once I got to my optimal level/dose (which is still trial and error) - try and hang in there x

[Ad78 in reply to A2C3]

This is very helpful. I thought I had a different disease. Thank you for your help

[SlowDragon Administrator in reply to Ad78]

Yes absolutely

Levo doesn’t really top up your own thyroid output….it replaces it

You can’t increase dose without new prescription

You will have to get new blood test at 6 weeks

Book early morning test, ideally before 9am, only drinking water between waking and test and last dose Levo 24 hours before test

This gives highest TSh and lowest Ft4

Then push for next increase in dose to 50mcg

Which brand of Levo are you currently taking

Ideally don’t change brand as you increase

Only change one thing at a time

[Ad78 in reply to SlowDragon]

MercucyPharma Levothyroxine Sodium

[SlowDragon Administrator in reply to Ad78]

Good

Mercury makes 25mcg, 50mcg and 100mcg

So when prescription is changed to 50mcg request Mercury from pharmacy

[Ad78 in reply to SlowDragon]

Okay. Thank you

[Ad78 in reply to SlowDragon]

I feel doomed. I don't know when Endo appointment will come through and my GP gave me 25mcg as trial. I don't think he can prescribe higher than that. I feel somewhat relieved that I don't have some illness though but these symptoms are brutal.

Thank you, SlowDragon for always being helpful

[Sparklingsunshine in reply to Ad78]

I dont know why GP's do this, its almost like they dont understand how Levothyroxine works or they set you up to fail. I've seen an increasing number of members on the forum who've been given 25mcg, which is a small child's dose fyi.

And without exception they feel worse, even if there was some initial improvement. It seems as though thyroid care is getting worse. Is there a reason why you've been referred to an Endo as straightforward hypothyroid is normally treated via your GP?

[Ad78 in reply to Sparklingsunshine]

Because the NHS only tests TSH and T4, they always tell me my thyroid is fine. Suffered fatigue and hairloss for years.

He wasn't going to give me 25mcg. I printed off all I had been told here and on other forums (they were all consistent) and took them to him before he reluctantly gave me 25mcg on a trial basis. He referred me to an Endocrinologist and advised me to go to the appointment with my printouts.

[Sparklingsunshine in reply to Ad78]

Ok I understand. As Slow Dragon explained on such a small dose you are likely to feel worse as your own thyroid output has slowed or ceased but the 25mcg isnt enough to replace what your body needs. Unless you were a toddler of course. I hope your Endo arrives soon.

[Ad78 in reply to Sparklingsunshine]

Thank you xx

[SlowDragon Administrator in reply to Ad78]

Get bloods retested yourself after 6-8 weeks minimum

[FoxyTed in reply to Ad78]

Been here re TSH 🙄

[FoxyTed in reply to Ad78]

Hi Ad78, yes when I started on 50mcg after about the 4/5 week mark I felt bad again, by reading the helpful replies on here, I felt more reassured and understood it better, this can happen when ready for increase. I have since increased by 12.5 (half a 25) so 62.5 but that’s only because I’m sensitive to change, I have now increased to 75mcg and after 6 weeks on this I will retest bloods. The help on here is a lifeline. Best wishes 🌺

[Ad78 in reply to FoxyTed]

Thank you

[serenfach]

Your GP can and should prescribe the right amount for you following tests. My GP got a bit scared after having to prescribe 200 Levo and referred me to an Endo who was happy to put me up to 350 Levo. I was not happy and moved to NDT but that is another story.

When you think your GP probably sees someone with thyroid problems nearly every day in their practice, it is shocking how ignorant they are. Then when you ask for your prescription to be altered, they start with "its all in your head" stuff.

I am sorry you thought it must be something else, and had that worry. No, you just need more thyroid hormone. Sending a hug.

[SlowDragon Administrator]

Looking at your most recent post

Retest was too soon after stopping levothyroxine

It takes 8-12 weeks for TSH to respond to reducing/stopping levothyroxine

Strongly recommend you ONLY start on just levothyroxine initially

50mcg is standard STARTER dose

Retest 6-10 weeks after starting

Slowly increase Levo dose up over 6-12 months BEFORE considering adding T3